| Jonah was a very good first baby, laid back and | | | | ironed her best table cloth and laid it on a large |
| tolerant; interested and lively but not excessively | | | | tressle table in the garden, under an old olive tree. |
| demanding. He slept and ate as he should, grew and | | | | Placemats and cutlery, polished glasses and napkins in |
| learned remarkably fast. He could sort blocks by | | | | rings. Everything was ready. She had chosen her |
| colour at 12 months and developed a fascination for | | | | Grandmother's crystal bowl to make her specialty |
| running toy trains along different surfaces at eye | | | | dessert. When the time came, who should she |
| level. Plump and cute, this was the boy who laughed | | | | choose to carry this precious piece from her kitchen |
| for hours at a daffodil and could stand tall with both | | | | to the table, in the garden? Should she ask her eldest |
| feet in one of his father's outstretched hands. | | | | daughter or should she ask her youngest?" She |
| It was Jonah's20-month check up, where the health | | | | waited for me to respond, the eldest, I thought. "She |
| visitor weighs and measures the child, then plots their | | | | chose the youngest because she knew that child had |
| growth on a centile chart. I told her that he'd been | | | | the skills required. God gave you this child because he |
| seen by 3 doctors in the last 2 weeks - they'd all | | | | knew that you, of all people, had exactly the skills |
| given him antibiotics for a suspected ear infection. | | | | needed to help him." We looked at Jonah. She left |
| He'd seen his own family doctor just a week ago. | | | | me and her story slowly nurtured an inner strength. I |
| Jenny was calm and efficient. She assessed him with | | | | am not 'religious', rather a more free-thinking spiritual |
| tests that children are rarely given. She called in the | | | | person. Her son, Yacob, had been born with an |
| practice's pediatrician who had a personal letter of | | | | under-developed brain. He died before we left the |
| referral in my hand in ten minutes and had someone | | | | hospital. |
| drive us to the hospital immediately. We asked to | | | | I spent about a month, in all, living in wards and |
| see Dr Houston, the pediatric specialist in our local | | | | around hospitals. I retold that story to new mums |
| crummy children's ward. He performed a selection of | | | | coming in and watched their hope sustain. Jonah |
| physical tests on Jonah and booked a CAT scan for | | | | survived one critical night, hour by hour, registrar at |
| the next day. The taxi brought us home just as our | | | | his side, and was operated on for over 4 hours the |
| friends were arriving for dinner and I had nothing | | | | next morning. His surgeon noticed the book I was |
| prepared. | | | | reading, Jonathon Livingstone Seagull, from his own |
| When a consultant asks you - no, tells you, to sit | | | | collection of Richard Bach. The doctors openly |
| down you know there's something significant coming. | | | | explained Jonah's medical condition and needs, |
| When the nurses in the room both grab your hands, | | | | procedures and choices. He survived, their biggest |
| you know you're either about to be sedated or | | | | tumour, and had MRI appointments every few |
| there's one mighty emotional shockwave about to | | | | months thereafter. |
| burst. Jonah had a brain tumour and it was, his voice | | | | Jonah came home a different child. His whole |
| actually faultered, it was massive - the biggest he'd | | | | personality had changed. Doubtless, he was coping |
| ever encountered. What do I want to do?... I want to | | | | with a level of background pain, but reacted so |
| go home, I don't want any more tests, I want to | | | | differently that I had to get to know him all over |
| take him home even if he's going to die. How long? | | | | again. |
| DAYS. | | | | I now had a 2 year old boy who could not sit up, |
| Numb. | | | | swallow solids, stand or walk. I got on with the |
| In fact, I think the man was just as shocked. Imagine | | | | intensive, daily physiotherapy and took a year off my |
| having to break that news, what a professional. He | | | | degree to rehabilitate him. His physio was easily |
| made a call to a colleague who was keen to have | | | | turned into games - throwing, catching, reaching, |
| Jonah transferred into his care. He was a paediatric | | | | picking up, putting in mouth, using a walking frame. |
| neurosurgeon, Mr Hayward, and gave instructions to | | | | Later on, wheelbarrow races and push-ups, swimming |
| withdraw his sedation and start him on what was a | | | | and karate. The benefits were obvious as |
| phenomenal dose of steroids in an attempt to reduce | | | | improvements were slow but steady from week to |
| the swelling, in case surgery did turn out to be an | | | | week. |
| option. I remember the daffodils in Regent's Park | | | | Living with a silent disease closed our future - we |
| viewed through the ambulance window. The height | | | | were incapable of planning ahead, beyond the next |
| of the 6-storey terraces and the squeal of the siren | | | | MRI results. Thoughts of his future, our |
| as we passed through intersections. This child is dying. | | | | developments in career, his future education, a |
| I can't leave him. I'll sleep underneath his bed, in that | | | | distant holiday were out of reach, for fear of a |
| chair, I won't sleep. I just can't leave him. I'm his | | | | recurrence. There was a recurrence. He underwent |
| mum. | | | | another surgery at the age of 4. As parents it was |
| Across the large intensive care bay, there was an | | | | almost unbearably frightening, as we knew the |
| incubator. A woman in a muted dress, with long dark | | | | procedure. However, we did it all again and by the |
| hair, watched us from the chair beside it. When the | | | | age of 10 he received word of his discharge. I |
| doctors and family had left me, she came over. She | | | | wrestled with this, word of mouth, comment. I had |
| said someone had told her this story and it had | | | | to have it in writing - and when the letter from |
| helped her to cope: | | | | Professor Hayward came, it had the magic word, |
| "There was to be a special family dinner and the | | | | 'cured'. I'm not one for hoarding but that's one piece |
| mother had been working hard to prepare all the | | | | of paper I will keep. Jonah still writes to that |
| favourite dishes and desserts". The woman had a | | | | Professor and usually sends him his latest drawings; |
| heavy accent but a natural lilt which was oddly | | | | he has our talent for draughtsmanship. |
| soothing in the sterile ward. She continued, "She had | | | | |